I have vascular/mixed dementia. When I first got my diagnosis, it was like a piano had fallen out of the sky and landed on my head. It was apparent that my life was going to change.
And change it did – everything from work habits to friendships to my relationship with my partner, Johanna. But while there have been plenty of challenges, Johanna and I have managed to adjust to the changes and be better for it.
For example, I recently moved to a care home. I didn’t like it at first and I hid myself away. But I soon realized that Johanna and I can now have a different and better relationship. When I was living at home, she was my caregiver. Now when I go back to our home, we can enjoy a friendship – we cook together and visit friends at our regular Friday night get together.
I have a gift for language and poetry, and I taught creative writing at my local university. While I can no longer write the way I used to, this gift helps me to illuminate my experiences. I can still share stories with my Alzheimer Society support group , where I have rich relationships because we all share something basic. At the group, we can shoulder each other’s burdens.
My heart remains open.
HERE ARE MY TIPS TO HELP YOU UNDERSTAND:
- Even if what the person is saying doesn’t make sense, don’t ignore it. Clarify what they mean, then answer.
- Do not lessen the experience of the person living with Alzheimer’s. It can be annoying to hear, “I’m forgetting some things too.”
- If the person can’t find his words, find other ways to communicate.
- Enjoy the relationships you have by continuing to participate in your favourite activities with your friends and family.
- Join a support group. It will help you share your burden with others.